Three days left before the second DSM-5 stakeholder review period closes

On June 16, the American Psychiatric Association (APA) announced an extension to its second public stakeholder review of draft proposals for categories and criteria for the next edition of the Diagnostic and Statistical Manual of Mental Disorders, which will be known as “DSM-5”.

The closing date for submissions is now Friday, July 15.

There are just three more days left in which to submit letters of concern in response to potentially damaging proposals being put forward by the Work Group for “Somatic Symptom Disorders” – the DSM-5 committee charged with the revision of existing DSM-IV “Somatoform Disorders” categories.

Today, patient advocate, Caroline Davis, has sent me a copy of her letter for inclusion on this site. Ms Davis tells me she has made her submission available for other patients to use.

For examples of other letters of concern, you’ll find copies of this year’s submissions, including the Coalition4ME/CFS’s resource materials and template letter, collated here: http://wp.me/PKrrB-19a. These include letters of concern from international patient organizations, professional stakeholders, patients, patient advocates and professional bodies.

If you have already submitted but have other points to make, please submit a second response.

If you know an informed professional please alert them today to the implications for patients with ME, CFS, IBS, FM, CI, CS, Gulf War illness and other illnesses that are bundled under the “Functional Somatic Syndromes” and “Medically Unexplained” umbrellas.

If the Work Group’s current proposals are approved, these illnesses will be sitting ducks for an additional mental health diagnosis of a “Somatic Symptom Disorder”.

If you haven’t yet registered your concerns, please get a letter in before the feedback period closes on July 15!

Submission by patient advocate, Caroline Davis

J 00 Complex Somatic Symptom Disorder

I would like to express my deep concern about the proposed new category of Complex Somatic Symptom Disorder (CSSD) in DSM-5 scheduled for release in 2013.

CSSD proposes to add a mental health diagnosis to any condition where the sufferer has been ill for more than six months, and has developed ‘excessive’ concern about his or her health.

Since most good employers have a sick leave scheme which pays full or most-of-full pay for six months, this timeframe coincides most unhealthily with:

a) The individual’s realisation that their illness might not resolve, and/or might possibly be a disability and

b) A concerted effort to research their condition and seek more tests and treatments in order to get well and

c) The looming possibility of job loss, financial penury and the imminent need to make insurance or disability claims.

A patient in such a situation is likely to fall slap-bang within the CSSD criteria of:

(2) Disproportionate and persistent concerns about the medical seriousness of one’s symptoms and

(3) Excessive time and energy devoted to these symptoms or health concerns

The effect is to automatically deliver a diagnosis for an Axis I psychiatric disorder, simply for finding out what is causing one’s symptoms after such a long time of being ill, and wanting to do the best one can in order to get well and save one’s job and prospects for the future.

There is no empirical data to support the existence of ‘CSSD’. I believe that it is neither clinically safe nor morally right to force through un-researched, untried, untested (and possibly entirely inaccurate) diagnostic criteria for an entirely un-researched, untested (and possibly false) psychiatric condition. As your paper itself says, CSSD is merely ‘a construct’. There is no empirical evidence to support this ‘construct’ but plenty of circumstantial and factual evidence for why this ‘construct’ has been proposed and is being pushed forward with such unseemly speed.

Most patients are sick, but not stupid. We were managers, scientists, teachers, medical people, civil servants and business people in our former lives, and we still have functioning brains. We can see that names on the DSM committee considering CSSD include those in the pay of insurance companies and Governments (including the UK medical establishment). We also know that the implications of DSM-5 will extend to the next version of WHO.

There are those on your committee who wish only to do the bidding of their financial paymasters, and they are doing this by creating diagnoses such as ‘CSSD’ which will allow insurance companies and Government agencies to deny the claims of the genuinely sick and disabled. I urge the rest of the committee members not to allow them to do this, and to remain faithful to the objectives of WHO classifications as an excellent source of unbiased medical knowledge for the guidance of medical practitioners across the world.

Please do not let the DSM – and by implication the WHO classifications – become the vehicle of Governments and insurance companies to get their financial needs met.

I urge the committee to see past the claim that: a ‘diagnosis of CSSD could be applied to any patient with any diagnosis’. In clinical practice, as well as in your own discussions, it is already clear that this ‘diagnosis’ would be applied far more readily to patients already vilified for having conditions for which there is no objective medical test, eg: IBS, ME/CFS, FM, Gulf War Syndrome, interstitial cystitis, long-term pain and others. I urge the committee to examine the level of medical research funding dedicated to these conditions: they will find that funding for biomedical research has been restricted to bare, minimal levels for the past thirty years, which goes a long way toward explaining why there are no differential medical tests for these conditions yet. The solution is more and better biomedical research, not to create a new ‘bucket’ classification to financially manage-away these conditions.

I urge the committee to consider the consequences of moving too fast to approve a classification which is likely to be immediately pejorative to patients. The inclusion of ‘CSSD’ as a possibility for diagnosis will tap into the already hysterical media and ‘biopsychosocial’ research claims and pronouncements about these misunderstood and underestimated conditions.

The consequences – unintended by those whose moral conscience on DSM-5 is clear, and jauntily dismissed by those for whom recognition of these conditions would be financially and politically injurious – are likely to be catastrophic. They include: sceptical medical practitioners who will increasingly believe that it is OK not to test and treat, nor to provide appropriate care, nor to support disability benefit claims; and insurance companies who continue to charge huge premiums and would (with CSSD in place) be free to dismiss valid claims for some of the sickest people they serve.

Not only is this not an appropriate route to management or cure for such patients, but the consequences will quickly spiral into poverty, physical distress and in some cases preventable death.

Even if a patient should subsequently recover, the stigma of a mental health diagnosis is likely to legislate against the possibility of future employment and full reconstruction of a career at pre-illness levels. Thus it would have a direct economic effect on both the individual and the economy.

How much is CSSD really about the management of sickness and disability in patients by doctors and health service professionals, and how much is it the product of financial machinations by insurance companies and Governments seeking to minimise liability for medical care and disability?

While there is such a dearth of properly-conducted research (by non-partisan medical scientists) into the medical validity, applicability and usefulness of CSSD as a diagnosis; and while the likelihood of rushing into including it is likely to have such potentially dire consequences for patients (and, through effects on reputation and liability, also for medical practitioners) I request and appeal for CSSD to be omitted from the DSM-5.

Yours sincerely

Caroline Davis

Patient, advocate

Second DSM-5 public review of draft criteria

The closing date for comments in the second DSM-5 public review has been extended to July 15.